Living, Not Existing

With Ryan at Yankee Stadium

Living.

This is not a post that I look forward to writing. When it comes to the controversy in the autism community surrounding Autism Speaks, I have found the best policy for me has been to avoid the shouting.

The sometimes deep divides in the autism community trouble me. And my own beliefs on autism have changed so much over time that I don’t believe drawing a line in the digital sand to stand on a principle I may or may not still hold in a few years makes a ton of sense.

When it comes to Autism Speaks specifically, I have been a quiet supporter. I donate. I have encouraged others to do the same, even as the organization’s viewpoint and methodology started to diverge from my own. I did so because I believed in the mission. I believed in the power of an organization that size to mobilize money, resources and the attention of politicians. I saw important work, like insurance reform, being accomplished.

I believe that Autism Speaks can be a powerful force for raising awareness and understanding, doing important research, lobbying for transition and adult services and more.

But I can’t support Autism Speaks any more.

My breaking point came with this week’s posting of co-founder Suzanne Wright’s “call to action” ahead of Autism Speaks’ policy summit in Washington.

If you haven’t read it, the link above will take you to the post. As of this morning, it was still live on the Autism Speaks site, with a comment thread numbering in the hundreds and a sentiment that is probably 99% negative.

Catch to Shoot

Living.

I don’t want to color your opinion of the post, so I’ll urge you to read it. I just want to tell you where the organization lost me as a supporter.

In the post, which is meant to serve as a call for a “national autism plan,” Ms. Wright describes 3 million children in the U.S. with autism diagnoses as “lost” and “missing,” among other things. She describes the struggles and sleeplessness of their parents and says:

These families are not living.

They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7.

Later, she goes on to ask:

And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?

Three times in the post, she punctuates the horrible situation she describes by saying, in bold:

This is autism.

I have to admit, I did not make it all the way through the post the first time. I stopped at “These families are not living. They are existing,” as a mixture of anger and sadness began to well up inside of me.

First Assist

Living.

I began to compose a response. I have met several high-ranking people at Autism Speaks. I have become friendly with some of them. This was not the mission they professed to be serving. I needed to let them know how misrepresented I felt by Ms. Wright’s words. But first, I went back and read the entire thing to make sure I wasn’t overreacting and missing some larger point. I wrote a long email to Autism Speaks but sent it to Veronica and some friends in the autism community first. When they came back with the same opinion, I sent it.

Not living? Merely existing? Who is Ms. Wright to make a blanket judgement about millions of people touched by autism? What does she know about my family?

Were we not living when we watched my son skate in front of 47,000 people like it was nothing? When he scored five goals on his peewee hockey team and was celebrated by his coach and teammates as the hero of several games? When we learned he made the honor roll and the principal’s list? When he began to self-advocate? When he made a friend on vacation? When we took one of our many, many, many sports road trips and spent deliciously long blocks of time in each others’ company, leaving the comforts and routines of home behind in pursuit of our shared interest? When he sends me (in what has become one of my favorite regular routines) text messages asking if we can play the next game in our long-running street hockey series as soon as I get home?

Ryan at the Winter Classic

Living.

Was I supposed to view that as merely existing?

We’ve had our struggles. We’ve had our low moments. Nowhere in my preparations to become a father did I envision finding my wife, pregnant with our second child, sobbing on the floor of the kitchen shortly after our son was diagnosed. I don’t recall reading how to comfort a child having an all-night, full-blown panic attack about the shots on goal totals in an NHL playoff game in any of the What To Expect books.

Ms. Wright’s language demonizes autism, and with it, demonizes my child and attempts to cheapen my parental experience. And if things get too much and we “break,” is that supposed to be my son’s fault? I’m sure Ms. Wright would tell me, no, it’s autism’s fault. But that’s the point. Autism is not a germ my son came into contact with. It’s not an outfit he puts on for the day. It’s part of who he is and I can no more demonize that than any other part of him, or my daughter, for that matter.

Maybe Ms. Wright isn’t addressing me. Ryan attends mainstream school (albeit with an aide, many modifications and plenty of other support). He struggles socially, but he can express himself. He’s smart. He’s loving. Maybe Ms. Wright only meant her description about those families who deal with challenges that come from having a child in the more severely affected end of the autism spectrum. I do not, nor would I ever pretend, to fully understand the experience of a parent with a non-verbal, self-injurious child prone to wandering.

Ryane Clowe and Ryan

Living.

There’s just one problem with that, and it gets to the heart of why I can no longer support Autism Speaks. You can’t get to the numbers — the famous 1-in-88 children and 1-in-54 boys — without including the likes of my son and many, many more who are more mildly touched by autism. Without including the full width of the autism spectrum, the numbers don’t support an “epidemic” or a “crisis,” two words that often appear beside those statistics in Autism Speaks’ materials.

Autism Speaks is trying to have it both ways. They use exploding numbers to call it a crisis, but descriptions like Ms. Wright’s are nowhere near my reality, nor are they for many autism families. I feel they have made a calculated decision to use fear to spur to people to action, to giving, to caring. It’s dishonest. And it has real consequences. Over and over when I finally read the entirety of Ms. Wright’s post, I had to ask myself how would Ryan feel if he read this? If he thought we had a lower quality of life because of autism? If he thought he was a burden?

My son is not a burden. Sure, he comes with some unique challenges that have shaped our experiences and put us on a different path. But a burden? Never.

I have a confession. From time to time, someone will tell us, with the best intentions, something like “I don’t know how you do it.” It always makes me feel guilty. One, because I know the challenges we face are mild compared to so many others and we are lucky to have access to the resources that help mitigate those challenges. But more so because I don’t think there’s anything exceptional about the way we parent either of our children. Sometimes we do a great job. Sometimes we make mistakes. Sometimes we go to great lengths to make our son or daughter happy. Is that a burden? No. It’s parenting. There’s nothing exceptional about playing the hand you’re dealt. Children do not come with a guarantee. If anything, autism has made me a better parent because it has taught me to slow down, focus on what’s important, celebrate triumphs of any size, and cherish time spent together. It has made me more tolerant and taught me to recognize difference in others.

Ryan, Riley and the trophy

Living.

Autism Speaks’ decision to embrace fear is a shame, because I do think there is a crisis, and I know they have the power to help mitigate it. I have seen the level of support it takes to allow my son to be an academic success story. And he is but one child, mildly affected, of many. I fear our schools are going to collapse under the weight of the need to support so many children. We need research into effective strategies. We need to know what works. We need to build understanding and tolerance of differences. We need to educate and provide resources to the parents of the newly diagnosed. We desperately need transition and job training services. We need to work with colleges and universities to find proper placement for those on the spectrum whose social challenges might otherwise prevent them from getting a college education and unlocking all the options that come with one.

Autism Speaks can be helpful in all those things. But they have embraced fear in an attempt to scare people into caring. It’s disingenuous. It’s dangerous. It’s wrong. Worse, it jeopardizes the mission we need an organization like Autism Speaks to serve.

They have lost me as a supporter, financial and otherwise. For me, the ends no longer justify the means.

On the sidelines with Ryan

Living.

Note: There have been many, many thoughtful posts about Ms. Wright’s “Call to Action,” as well as hundreds of insightful comments on the original post. I encourage you to read them and form your own opinions. Here are some helpful links:

no more – a letter to suzanne wright” – A Diary of a Mom
Autism Speaks is not and has never been listening despite their slogan” – Autism From a Father’s Point of View
Dear Ms. Wright, Autism Speaks and any others out there who may read this…” – Mama’s Turn Now

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48 thoughts on “Living, Not Existing

      • I appreciate this post, but wish that you had not made your point about dehumanizing language by saying it is ok to use it to describe kids who have more support needs or functional limitations. Our lives are meaningful and valuable too. The Autistic Self Advocacy Network is a great organization that could put the financial support you used to provide to Autism $peaks much more effectively and efficiently ;)

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      • Clarissa, thank you for your comment and recommendation. It was certainly not my intention to suggest that dehumanizing language is OK for any subset of the autism community, only to point out that AS is using language to describe one set of circumstance and attempting to project it onto a very broad population in a very disingenuous way. In retrospect I can see how my words could be interpreted the way you describe and for that I apologize. I am familiar with ASAN and will certainly consider that group for my annual giving.

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    • My grandson is diagnosed on the spectrum. He struggles with some behaviors and rules, he has a problem tasting many foods, he has other difficulties but he is living and so are his mother, his sister, and our family! We just live differently sometimes. We don’t attend the church we would prefer because they don’t know how to deal with my grandboy; so, we go where he is accepted and loved. We don’t go to festivals with large crowds because of his anxiety or his wandering off but we live! We have fun, we enjoy life and I so enjoy my grandboy. He is wonderful and very human! Thanks you for your sharing your feelings and thoughts with us!

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  1. I understand what you are saying… but your son is apparently not as severely impacted as others. (Which am very glad for!) You refer to them (the severely impacted) several times above but then dismiss them because it is not your experience. So, what about those families? The ones who really are just existing? Hanging by a thread? The ones with “non-verbal, self-injurious child prone to wandering” kids? Who speaks for them? I am not trying to be mean but I am so tired of reading things from either high functioning autistics and the parents of, condemning the idea that people are suffering from autism. Some people actually are! Why is their situation unacceptable to talk about simply because it paints an unattractive picture (which is REALITY for them) of autism. I am worried for these families who are not allowed to voice their very real fear and down right awful situations. To be brushed aside for a more cozy happy portrait.

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    • Please understand, I did not write the above to pick a fight. You seem like a very intelligent and informed father and I would really like to know what you think!

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      • Caryn, thank you for your comments. I did not take them as picking a fight in any way. I appreciate you coming on and taking the time to explain your point of view. I don’t disagree, and your criticism is warranted. Viewed from your perspective, my point is somewhat muddled. I certainly did not intend to dismiss anyone.

        The overall point I’m trying to make, and the reason I can’t support Autism Speaks any longer, is this: In my opinion, they are manipulating statistics and trying to scare people into action/attention/donations. The only way you get to 1-in-88 is by including everyone on the spectrum, from mild to severely affected. Yet Ms. Wright is speaking as if everyone who has a child on the spectrum is in desperate circumstances. If Autism Speaks were only representing the need for assistance for the most severely affected, the number is nowhere near 1-in-88.

        The fact is, children with autism, mild, severe, in between, become tweens, teens and adults with autism. They can think for themselves. Many can express opinions. They can tell the world what kind of assistance they need. At the very minimum, they need to have a place in the conversation. Describing all these children as missing, as a burden, is very unhealthy for those children that the organization is trying to assist.

        I do not mean to suggest in any way that services, research, awareness, legislation — indeed, a national “plan” — are unnecessary. I just can’t support the means Autism Speaks is using to get people to pay attention to that need, because I feel it hurts many of the people they are trying to represent. I also do not believe AS is an evil organization. I think this is a calculated approach to spur people to action. I think it’s the wrong approach.

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      • Caryn, I feel compelled to respond to your comments and will let you know that I am the wife of Neil and the mother of Ryan. I need to let you know that for many years Neil and I fully supported Autism Speaks because we felt they could do SO much good for the autism community. I have many times felt that I didn’t have the “right” to disagree with them on certain issues b/c we are so fortunate that Ryan is so high functioning. I work with families with genetic diseases and I see first hand what a child with significant needs can do to a family; the daily struggles, the sleepless night and the overwhelming grief and fear. I have argued many times with others in the autism community and within my own family that you don’t KNOW what it is like for families of 16 year olds who never sleep, who are aggressive, who are non-comminicative, who are not toilet trained. That is not our experience, but we did have the same fears when Ryan was little. I have cried so many tears about Ryan’s diagnosis of autism that it could fill a river. I will NEVER say that I am happy for his diagnosis, however, I have come to acceptance that it is who he is and not WHAT he is. I won’t speak for Neil, but I will say that finally yesterday I came to the conclusion that I can no longer defend Autism Speaks. They only speak to one part of the autism community. They only tell one side of the story. They no longer represent MY son and our family. I absolutely HATE what this does to our community. While no family has the same experience, we are all dealing with similar issues and we should be there for one another, not torn apart. Please know that we do know that our experience is not the same as others. Please know that our hearts ache for those families torn apart by the difficulties of autism. Please know that we understand and want to help in anyway we can. However, I can not support any organization that tells MY son that he is LESS THAN and that he is a BURDEN to me. I wish you all the very best for you and your family.

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    • Hi Caryn – totally understand what you’re talking about. I think there is always a challenge when experiences are very diverse. There IS suffering, but that is not the ONLY experience. The situation that many of us come up against with Autism Speaks is that autism is a spectrum, there are LOTS of autistic teens, adults, etc., many adults that have tried to engage with Autism Speaks, but they are ignored and not respected. The link here includes a story where Mrs. Wright grabbed the blogger’s child’s face to make her look at her – this is the woman who is the CREATOR of the organization, and she just. doesnt.get.it. (http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/)

      It’s not that the profoundly impacted can’t be talked about, it’s that Autism Speaks talks about NOTHING ELSE, it’s all about kids, doom, and gloom. That hyperfocus on the doom/gloom hurts autistic people and the people who love them. (http://www.blog.mamasturnnow.com/2013/11/12/dear-ms-wright-autism-speaks-and-any-others-out-there-who-may-read-this/) .

      We need communication tools, we need therapies, we need respite care, we need employment supports, we need public awareness of the full spectrum, we need simple disability support accommodations in the world and the workplace. We need autistic people to be part of the organizations that support them.
      Autism Speaks needs to see the full spectrum, they need a sea-change. They are shutting too many people out, especially those who are autistic.

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    • But what good is Autism Speaks doing for so-called low functioning autistic people?
      Are they setting up swimming lessons and a simple network to locate wandering autistic children? Are they assuming that even if a child cannot speak, they can still feel and think and have emotions? Are they presuming competence? Or are they just dehumanizing people with autism, refusing to look at their perspective, not even LISTENING to folks to describe their point of view?
      If these people could just push the concept of working with autistic people on their terms and empathizing with them… But no, they’d rather use pity porn and they’d rather support the JRC which abuses autistic children and adults. Enough of them. They need to be pushed out of the spotlight. They are just lining their pockets and we should take them down and call them on this.

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    • Can you tell us Caryn how it serves either you or your child to embrace the vision the group mentioned paints? Severe or not severe has little to do with it. They are saying your child is entirely missing. I worked in respite care across disabilities and the most severely impacted in every single way possible child I ever looked after was still very much there. In fact the marvelous thing about his family is by default they treated him that way despite his being blind, deaf, parylized and having such constant seizures someone had to sleep curled around him. 99.99999 percent of all people with autism are by comparison easy but comparison is useless.

      I’ve mentored autistic children across the spectrum from the seemingly severe to the so called high functioning. That much of the underlying neurological reality is the same is still the case. I’ve had at times some kids interact with me in ways they never had with anyone else and I always feel a mixture of hope and embarrassment then as I don’t dispute for a minute that it isn’t easy to parent any child let alone one who isn’t typical.

      Sometimes happiness is a matter of expectations. So how does expecting your child to be absent, kidnapped, gone, unreachable and all the other horrible analogies made about autism useful to either of you Caryn? How is drawing artificial lines where there are none useful?
      if
      The people who are against this group are against it because it is simply not okay to dehumanize any living breathing person for profit which is essentially what they do. When I was young there was a notion that autistic children could not love people. So pervasive was this myth to be honest I believed it myself when I understood it. My mother was deeply wounded by this more than the speculation about my intelligence, or that finally having had a child who she presumably had a language in common with I spoke rarely for years, and who never outgrew completely losing the ability under stress.

      The fact was even when things could have gone very much in the put her away and start again realm there were people willing to doubt. It was a lot easier to get instutionalized when I was young than it is now but I think if a group like this had existed then would my family have doubted enough to keep me out? To insist when kindergarten was a complete nightmare I go to grade one?

      In many ways parents of “the more severely impacted” should be the most outraged as you are being told you pretty well don’t have a kid.

      I used to chat in real time with parents using IRC. People I still consider friends often came into the chat reeling from a recent diagnosis. One had to make a lot of tough decisions about her now grown son. Thankfully that he was present was never a stated issue or he wouldn’t now be both happy and frankly scoring higher than I do in activities of daily life measures, Don’t let anyone steal humanity from anyone. A label is only any use at all if it achieves something positive and it is hard to see how any label used by Voldemort speaks does that.

      Be angry if you need to be. Just don’t feed the propaganda machine.

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    • My daughter is among the more severely affected. Most of her communication is in quotes from Disney movies, or simply incoherent moans and whimpers until I figure out what the problem is. She will eat only waffles for breakfast, a jelly sandwich for lunch, and chicken nuggets and Doritos for dinner – deviate from this menu at your peril. She didn’t become toilet trained until the age of 10, when her brother (who is more high-functioning) mastered it and she apparently decided not to be the only one in pull-ups. She is inclined to striking her own head, quite hard, when she’s upset.

      She delights in dandelions (her favorite color is yellow), birds, large dogs, and Disney princess movies. She’s also developed quite a fondness for the “Lord of the Rings” movies, especially “The Two Towers”. A few months ago, she began tuning into Disney XD on her television, varying from her previous steady diet of Nick Jr. She reads a little, not much – but she’s very skilled at ripping out a paradiddle on her drum set.

      She is unfailingly kind, thoughtful, and sympathetic toward others; her only failures of politeness come when she’s upset. She has a lovely smile, which is frequently commented upon. And having lived in close quarters with her and with the daughters of a former roommate, I wouldn’t trade my autistic princess for anything, particularly not for some spoiled neurotypical brat.

      We are not “merely existing” – we are living. And we get to take joy and pride in accomplishments that “normal” families will never understand.

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  2. Thank you, Neil and Veronica! I don’t know that much about Autism Speaks but I do know that there are families out there living in very desperate situations. I just don’t want their struggles to be made invalid. It seems that there is a whole army of Autistics and others out there writing blogs, articles, etc. that discredit these families reality because it doesn’t portray Autism the way the writers feel Autism should be portrayed. These families are real and they need HELP. NOW. The only way they are going to get help is if the public is aware of how desperate Autism CAN be. Yes, there are all different levels but we cannot ignore the most severe just because it is a not pretty picture for the public.

    We need to band together and not let ourselves be torn apart by outside forces. Veronica, I cried when I read your comment. I cry with you, but for my own son. He is my sunshine! Please know that even though I don’t know you and it might sound weird but… I support you, mom to mom. We can be strong and brave together :)

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    • Caryn, It doesn’t sound weird at all that you support me, because I have found that although I have many supportive friends, the only ones who truly ‘get it” are other autism moms. We understand each other. We know the worries, the fears, not only for our sons, but for our entire families. I sometimes think I would be happier if I only dealt with others in the autism community. Although we have good and bad days, a few years ago I would NEVER have believed my son would be where he is now. Our lives still revolve around autism, but there are less tears and more hope. My warmest thoughts for your son and your family. From one mom to another.

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      • Thank you, Veronica! I hear you…. About 4 years ago I had the good fortune of attending a support group meeting for the parents in my son’s class which was set up by the school psychologist… one thing led to another and now the moms I met that day are my best friends! We meet for coffee two times a week, take our kids on ‘field trips’ often (with husbands and siblings, sometimes there can be more than 20 of us hitting the town… it’s quite a sight!) and have monthly dinner dates (with our husbands to foster their own support system). They have had a positive affect on my life that I cannot quite put into words. You are right, we understand each other. We support each other. It is important and I hope that all parents seek out and find what I have been blessed with! So, from afar, I support you and wish your family all the best!

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  3. I am so saddened that she never mentioned the individuals that are successful and living a valuable life as well as having a diagnosis of Autism. In the Government Contracting Firm I work for here in the DC area, some of our highest paid and most successful workers are on the
    spectrum. It is my opinion that if you constantly say how horrible, terrible life is for the families and the individuals you are basically screaming to the world that the sky is falling. Yes there are needs that should be addressed — insurance, the education system, support therapy, educational change, research and workforce training/assistance. Her posting was all about Doom and Gloom. She needed show HOPE, CHANGE and how a DIFFERENCE IN LIFE can change the world. So, so sad that the head of AS is so out of touch with the entire community.

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    • Uh, yeah. How is a person supposed to feel knowing their child is autistic when all autism speaks portrays is doom and gloom? But doom and gloom sells more than showing people living on their terms, struggling on their terms, but living and thriving. Useless organization.

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    • As a recently (2012) diagnosed Aspie (or ASD if you will) my reply is quite simple: Were it not for those on the spectrum Silicon Valley would still be growing lemons and oranges. The most difficult part was for my sister to accept the fact that her brother was less than “perfect” by her standards. Then again what is “perfect”.? The fact that I am an exceptional photographer. I read through almost all of the 32 Beethoven Piano Sonatas at age 27 in seven sessions at home. I probably dropped enough notes for 32 more sonatas but I did it on my own! I make the most of the gifts and deal with the issues as best I can. As a result I have become a strong advocate for those adults who, in their latter years, have been diagnosed as being ASD. It could be a lot worse. I could have been a condescending NT feeling sorry about those poor people that are on the spectrum. All of us on the spectrum have something to contribute. Please check the closing moments of the final episode St. Elsewhere and Tommy. It might open a few more eyes considering the year of that final episode.

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  4. I stepped away from Autism Speaks a while back, as I realized that my sons were growing up and wouldn’t be finding representation in that organization that professes to “listen” to autism. But I stepped back quietly, and I didn’t make a big deal about it. I actually found it hard to explain to people why I couldn’t support their fundraising drive for A$.

    Not anymore. It’s simply a matter of respect. They don’t have respect for my kids, for my husband, for all the friends I’ve met who share this diagnosis. They can’t have respect for an entire population they are at the same time stereotyping and demonizing – and I couldn’t bear my guys to think I felt like that about them. Even my youngest, who has more severe issues and does need more intensive help, will NEVER hear me refer to him like his’s a burden or damaged in some way. He’s autistic, he has epilepsy, he has cerebral palsy … he has a TON of challenging diagnoses – but before all that he is awesome. He is my son. Autism is a part of who he is, not an entity in and of itself.

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    • YEAH! Autistic people need support, decent jobs, understanding schools, education that will benefit them and not just “normalize” them. Autism speaks doesn’t help with that. The negativity leads to fear and not seeing what autistic people can bring to the world!

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  5. Excellent comments! I’ve always tried to be very careful generalizing about autism as I do know people with severely affected children – but I’ve also seen incredible LOVE in so many parents, no matter the severity. Autism Speaks seems to dismiss that love, and uses shocking language to raise money (I wonder how much the President makes?). I looked at the speaker lineup for one of the days of the summit – and it was primarily politicians and government services people and virtually NO experts working in the field of autism itself (and, of course, no one on the spectrum)! Yes, families need support – and there are other groups (I’m a part of the Autism Society) who do the job on a far more inclusive basis.

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  6. Pingback: Why I’m Proud of my Community (including our allies!) - Evil Autie

  7. Hi, I have not posted a comment concerning my autistic son in many, years. However due to the circumstances now associated with AS, I think it’s time to speak my piece again. First I would like to say a house divided cannot stand, it is a fact of both nature & science. Those who are electing to leave AS are bound to start their own organization where they feel they can be heard properly, and I can only wish them well and hope that they find what they are hoping to accomplish in their familiar world of Autism. I was a once a believer, as they are now, that my high functioning son, was capable of living a full and productive life and needing little maybe no assistance at some point in his adult life, because we were living an amazing complex life, that I never imagined we could live, oh what fun it was, even though it was full of daily challenges, my “wiz kid” was more than the apple of my eye, he was my everything. I was totally engrossed in his talents and his amazing gifts. Teachers, family, friends, and clergy thought he was full of promise and encouraged our family regularly, in the pursuits of, helping our son succeed into adult life. I wish I could write the next phase of my son’s life after high school, without crying, but it doesn’t matter, because you can’t see me cry, so it’s ok if I cry. So I’ll cry again …pause…My son, now in his 30′s, lives with us, his aging parents, we are in our 60’s, we cannot retire because we support our son financially and now it’s hard to see the light at the end of our tunnel where retirement waits for those who have labored over 45 years, we understand it’s unrealistic for us. Oh yes we hope he will be able to live independently before we pass, but is it realistic? Are we chasing a false hope, I think many days we are hopeful because that’s all we really have left. After high school we sent our son to a very expensive private college, where he was supposed to get help navigating into college life, instead he quickly crashed and burned, he only attended 2 semesters and we are still paying the college bills. After experiencing that monumental failure, as our son liked to refer to it, he started a downward spiral that lasted 11 years. Deep depression took over his life and for many years he just simply existed and we just simply existed too. He went to jail, he ran away to another country! (We’re still paying the bills for that too), he physically attacked us. He became a stalker and a danger to one of his “friends” who tried to help him (I never thought that was in him) he was put into a mental health ward in our local hospital and all this time, he just simply existed and we barely existed. We lost contact with many of our “friends” because our son was a total “nut case”. Most people were afraid to associate with us. Only family was still “hanging” with us, we felt abandoned by many and all the support services we contacted to help us, told us our son had to ask for help, he was over the age of 21, he had the right to refuse treatment. But they were more than willing to put him in jail, if we called for help, when he was attacking us. So we just simply existed. I’m telling you this story because some parents out there need to understand this truth, sometimes the best and most high functioning child reaches a stage in life where he just simply exists and as a parent who was raising a wiz kid, it’s unbelievable that this could ever happen, I know some of you are thinking… not my kid, no way, never in a million years will my child be like yours, well I hope & pray you are right, but let’s be realistic for just one moment and let me say this, you never know what the future holds for your child. What they are as children, is not what they become as adults, you need piles of intervention. I’m telling you, believe me, you will need piles upon piles of intervention. As parents you will need the strength to move mountains, and you will have to stand alone with your son. I know this is hard for you to fathom, but some of you will experience this kind of outcome and really need to refer back to this. I hope your marriage is strong enough to sustain the impact that autism can have on a relationship. As parents I urge you to hold on to hope, till your dying breath, that your child will turn around and become a functioning productive member of our society. Ok, now let’s speed up, to present day, I wish I could tell you that he is a well accomplished citizen who loves his parents as much as we love him, and appreciates all that we have sacrificed for his wellbeing, but he’s unaware of such sacrifices, (one of my least favorite “autism” traits, the lack of empathy for another person) As I said earlier, he lives with us, he struggles on a daily bases, to understand this world around him, he drives himself to work which is only 15 hrs per week at a local library, because that’s all he can tolerate, he attends a local college where every semester he takes a couple of courses. My son, as I have come to realize, is a great accumulator of information, he retains all sorts of facts and fiction which bring him great joy. He has asked for services again, and receives minimal assistance from our local service agencies. We appreciate all they do for him. They are a wonderful group of people who are “our right hand”; every parent should have such wonderful support. Our son sees a physiatrist regularly, and a counselor weekly, and a medical doctor who manages his meds. He doesn’t have anyone in his life, we would call a friend. He is easily manipulated and therefore is very leary of people. He only deals well with family; he has two siblings who tolerate him for a few hours at most. We hope someday our son will be independent, and that we don’t go backwards in time to those awful years full of depression and hopelessness. But we are also realistic at this point and don’t expect more than what we see right now, we have learned to be happy with simply existing and accepting of the fact that autism is an injury to the brain, and each injury is unique to each person, therefore each individual is limited in degree and ability in terms of “normal” function. I admire the many ways our society is constantly in pursuit of understanding autism. I must also say that now I understand why, so long ago and far away, a kind and gentle pediatrician told us, “I’m so sorry; your son has been diagnosed with autism,… I’m so sorry for you, so sorry to give you this news”. And so, please understand on this occasion, I felt the need to all of you parents out there, who have high functioning autistic children, aspies, mildly autistic, whatever you want to call it… Please understand that sometime in the future, you will just simply exist, and your child will just simply exist, and you can find happiness in it. Oh yes you can. Dividing an organization because you think they don’t hear you, is not productive, it’s sad. I firmly believe that anyone who is willing to bring attention and awareness to the seriousness of autism will create a better future for our children. If it has to be, two separate venues, with the same goal, ok, let the fundraising begin!

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  8. Thank you for this. I broke down after reading that article. I have a 10 yr old nonverbal autistic boy that is delayed to a 2 yr old level. And we live life to the fullest. He swims and horseback rides. We’ve spent hours learning how to roller skate this year. He’s been to Disney World, Las Vegas, Grand Canyon, Tetons, yellowstone and this summer we did a driving tour of much of Texas and New Orleans. We go out to dinner, movies, zoo, museum and amusement park. He does everything any other kid would get to. Because why the hell not :-) We have bad days and bad nights but so does everyone. Why is what we are doing only existing? I’m glad to hear your son is doing well. We have a 9yr friend on the spectrum and he goes for basketball. They all find their place. Am I “in fear of the future”? No way. I live in the present, when the future comes we’ll be there too. The one thing I do for my son’s future is make sure he impacts other children’s lives now and answer their questions. Because when he is an adult, they will be too and that understanding can go along way.

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  9. Ahhhhhhh…I needed to take a breath. I just came home from a long day at work, and my wife asked me if I heard what happened today with Autism Speaks. No, was my response. An hour or so later here I am. I still consider my self a “new” autism parent as our son’s diagnosis was only a year and a half ago. So with that, I have never quite understood the issues that some people within the Autism, our Autism community have raised with Autism Speaks. I saw Autism Speaks as the voice of Autism, spreading awareness, which we desperately need.

    As I read through the letter from Suzanne Wright, I realized that she was not speaking of my Autism (our son is high functioning). Did I agree with the comments, no, not at all, but the thought of a national plan (even though I am Canadian) was something I can get behind and agree that we NEED. The further I read, the more I wondered how those in my position fit in to this national plan. As I read through your comments above, I realized, amongst other things, that maybe we didn’t fit in at all. More alarmingly, as I thought about the comments in the letter, the comments above and other blogs, I realized that I did not want to fit into a national plan based on this philosophy of shock and awe.

    My wife and I have fought to understand Autism, we understand that our Autism is not everyone’s Autism. We work to make sure our family and friends understand this same thing. Its a struggle that I am sure we all share. The comments in Suzanne Wright’s letter seem to indicate that Autism Speaks does not understand this. I do not want my family and friends, or the general pubic, to think that this is the only Autism. I understand that this may be Autism for some people. I understand that we need to talk about those people, they NEED help, I get that I really really do. But my Autism, MY SON needs help too. If a National Plan, the public’s perception, is based on this, Autism Speaks shock and awe version of Autism, where does that leave us? At the very least, it has the possibility to make our struggle, for help, support, awareness, everything, that much harder. I apologize if that sounds selfish, it is certainly not meant to, nor am I implying that we need help more then those that are more severely affected by Autism. Only that we all need help, and this shock and awe version may not be the way to help us all. If Autism Speaks is our accepted national (international) voice, and for all intents and purposes it appears that it is, at least in the general public’s view, should its mission not be to help all of us.

    I can see how this position, especially from its founder, can cause some people to distance themselves from Autism Speaks. Unfortunately, I think I am joining those ranks.

    Jason

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  10. My own experiences with my own autism have been no picnic. I don’t really believe in high and low functioning because depending when in my life people were deciding that I have been all over the place and I know I am not alone in that. Things looked bleak for quite awhile then better then bleak and repeat.

    I don’t question for a moment the anguish my own mother felt throughout my lifespan. That would have been the case though if I were typical as well. The only real difference is since I wasn’t there were no shortage of people painting out my life in broad brush strokes. No one would have tried that for my siblings.

    I had a lot of trouble actually accepting my autism since it was until my arthritis got worse pretty well the only thing I couldn’t just triumph over by sheer force of will. I thought of it in pretty much those terms for way too long. Even when I went with the Star Trek model of being like Data it was unhealthy as didn’t have some of Data’s options including being in a mostly utopian environment where everyone but Data isn’t all that bothered by the fact he is an android. I thought my programming too would be outgrown. It’s embarrassing to say but I carried on thinking that despite a degree in psych from the university rated as Canada’s best and a solid understanding of autism as it didn’t pertain to me. I don’t know why I did. I had enough knowledge to question only the notion that it could be cured. I knew that for anything labelled as pervasive seated in the brain there simply is no such, meaningful thing.

    So even at my own most self-loathing I did know that the notion of loving the child but not the autism was pure bull tweet and no good would come of any approach where people cling to that. I recall so well hearing things said I should never have heard because people dismissed me. Of course that trend persists even now as my stress related loss of speech shows me over and over how much people confuse possessing the ability with intelligence.

    Things have been harder than I would like for almost two years straight now. Hard enough to have me in tears of frustration. Hard enough for the issue of whether I should be in a home again to come up but does someone get to pretty well state I am somehow equal to a natural disaster because I cost a lot? No.

    For 24 years I was reminded in my work about how often the default narrative seems to be to describe any child in terms of what they cannot do. When the child has a disability there is an alarming tendency for someone, usually a well payed someone, to make what amount to total guesses about what this kid will ever do.

    Voldemort Speaks (not going to depart from my long held tradition of not giving them free publicity) has a monetary interest in painting the bleakest possible view. They’ve used every tactic they can think of too exclude actual autistic voices from that the picture they are painting. In recent years they have taken to buying autistics they seem to view as tame enough to say what they want them to say but even that is not working for them.

    If there is a need for centralized fundraising then why not do it in a manner that is respectful and doesn’t question any humans right to exist? Why not do it in ways that are actually educational? Right now they are the number one source of bleakness. I have seen my parent friends in tears often enough from sheer exhaustion to know more doom is not needed.

    I had a herculean task yesterday. That task was simply tolerating noise and lights long enough to buy four items so I didn’t starve to death before Friday. Sadly that’s not at all hyperbolic. More services are absolutely needed. Treatment is not something I oppose as long as no one is confused about what needs treating. Respite I am 100 percent behind. It would be a sad state of affairs though if we had to subscribe to the Voldemort Speaks vision to get anything. Oh wait since these sort of direct services are still neither a priority nor a huge budget line item even if we totally buy it in every way we don’t have much to gain and our collective humanity to lose.

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  11. Autism is a spectrum disorder. People have varied forms depending on WHERE they are on the spectrum. I have cared for the children of parents on the more needy end of this spectrum when their parents could not manage it anymore and It took two three and sometimes more grown adults per kid to meet their needs but no where is there no hope but as States like Indiana close access to parents of Autism, due to decision to make child protective services in charge of disabilities group homes not department of disabilities then who will help the children of parents with extreme needs.
    Good luck one and all as these recent changes have made group homes in Indiana dangerous places for disabled children who are nonverbal. I couldn’t make it better. I couldn’t get people to listen so I have quit the field and am now teaching “normal” kids for the first time in 20 years. Prayers for the kids….maybe we do need someone to be the voice for these kids you all think?

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  12. We can do more than merely express our frustration to Autism Speaks. Since they only appear to speak the language of corporate greed, let’s use our numbers and start writing and talking to their corporate sponsors. Remember Susan G. Komen and Planned Parenthood? We can be the change we want to see in the world.

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    • Cinder, have you connected with Boycott Autism Speaks? That’s exactly what we’re working on, and ASAN has a letter available that you can send to corporate sponsors as well.

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  13. Pingback: Living, Not Existing | Communication and Autism...

  14. First, a disclaimer–I have never been a fan of AS. Thank you for your thoughtful response to this issue. What struck me about Ms. Wright’s post was she never mentioned all of the amazing teachers, therapists and others who give and care so much for individuals with autism. I understand that many of those individuals aren’t getting everything that they need, but what about acknowledging the things that ARE working? It’s just plain old fear-mongering, IMO.

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  15. As the parent of a now 22 year old son with high functioning autism, my reaction to Ms. Wright’s article was a touch of irritation. how does she presume to speak for all parents of children on the spectrum? One national curriculum for students with ASD? Now that is a sure way to fail most of these students. One method of treatment? We do not know nearly enough to be so arrogant. The different types of autism have not even been identified and described. And there are different types. I appreciate the increased awareness brought about by Autism Speaks, but following the recommendations in this article would damage many more children that it would help

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  16. I am the mom of a low functioning “autistic” 17 year old. WE ARE NOT LIVING. WE ARE SURVIVING. It is a spectrum and those of us on this end can not live. period. I don’t have stories of basketball games, hockey games or vacations. A walk in the park is hard. I can’t find a job because I have to be here for my child. The medical community shuns us. Nobody should live like my family does. oh, and worse yet we get told, “Why isn’t your son winning the basketball game like that other autistic child? He can’t even be near a gym full of people. Get a clue.

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    • Hi! I just wanted to let you know that I heard you. It makes me sad that people in the Autism community want to ignore families in your situation simply because it looks bad to the public. My heart goes out to you and your son and I hope that you are getting support that is beneficial and meaningful. Much love to you :)

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  17. Pingback: This Is How We Should Talk About Autism | Pucks and Puzzle Pieces

  18. The best response I’ve read to the disappointing and discouraging Autism Speaks article. I know that every family has a different struggle and children vary in the severity of their behavior problems and their cognitive delays and processing, etc. etc. But when I read, “They are not living” I broke down in tears. I am not the parent of an autistic child, but I am a teacher and a friend and an advocate and a godmother of autistic children and there is no doubt in my mind that their lives are full of worth and purpose. Despite their challenges, they are LIVING. I am going to remember that “autism isn’t a germ” concept to help people understand. There isn’t an enemy. There isn’t a foreign body or a cancer to be beaten or removed. You are absolutely right that for better or for worse (keeping in mind how badly some families struggle), autism is as much a part of your child as their eye color or shoe size. I am so grateful for your positive and loving voice, thank you for writing.

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  19. Pingback: What in the World is Going On – December 2013 Edition // Autism Awareness Centre

  20. Pingback: Mixed feelings about Autism Speaks | My Autistic Son

  21. Pingback: Awareness: Still Needed | Pucks and Puzzle Pieces

  22. Pingback: Autism Awareness Day 2014 | Pucks and Puzzle Pieces

  23. for parents of autistic people who are on the more severe end of the spectrum, and who support autism speaks, has autism speaks’ method of demonizing and dehumanizing your children, putting more money into salaries than programs and more money into “curing” research than into supports…has any of that actually helped you personally? i know some “low-functioning” autistic people and parents who still will not support autism speaks because, even though they claim to be speaking for that segment of the autistic population, their methods are not effective in making meaningful change in autistic people’s lives and the lives of their families, and indeed, STILL do more harm than good to “low-functioning” autistic people.

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  24. I didn’t read this post back when the whole “Call for Action” thing happened in November; it just showed up in my news feed today, but I wanted to thank you for it. It’s another great response that I will share with people.

    One thing:

    “Maybe Ms. Wright isn’t addressing me. Ryan attends mainstream school (albeit with an aide, many modifications and plenty of other support). He struggles socially, but he can express himself. He’s smart. He’s loving. Maybe Ms. Wright only meant her description about those families who deal with challenges that come from having a child in the more severely affected end of the autism spectrum.”

    Autism Speaks frequently does pull the “We’re not talking about kids like yours” or “we’re not talking about people like you” thing and claim to only be speaking for the severely-affected/nonverbal/”low-functioning.” But they are. They are talking about your kid and they are talking about people like me–MOST people would never look at me and think “severely affected” in any way, and it’s not a claim I would make, either. But in the “Call for Action” post, Ms. Wright was describing children indistinguishable from me as a child. And many, many parents I’ve been in conversations with who are very sure that I’m nothing like their non-communicative, “severely-affected” child, have gone on to describe experiences of their children that I recognize very, very well from my own childhood.

    They’ve lost all credibility for the claim that they’re not talking about people like me and like your son…when the words they use are describing kids just like me, whether they mean to or not.

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